VIRGINIA COMMONWEALTH UNIVERSITY

NATIONAL RESOURCE CENTER
FOR TRAUMATIC BRAIN INJURY

Neuropsychology and Rehabilitation Psychology Division Department of Physical Medicine and Rehabilitation.

Brain Injury Association, Support Groups, Survivors

Brain Injury Association, Inc. (BIA)

The official site features state office contacts; media resource references (books, tapes, video); information on injury types, coma, evaluation; pediatric information (e.g., prevention, fact sheet); facts and figures. A community forum and bulletin board are also provided.

Headway Victoria

Regional information; publications list.

While you are waiting

Nice site to start with when family member has newly acquired TBI. Provides general information about Brain Injury (e.g., glossary of terms), an ICU Guide (e.g., explaining function of equipment, roles played by different medical team members, etc.), frequently asked questions in prognosis, advocacy, financial and legal issues, discharge, and rehabilitation.

TBI Chat Room

Real-time chat support for survivors of traumatic brain injury.This java-enabled site may take a few minutes to download, but may be a great resource, especially for those with limited transportation resources.

The TBI Recovery Network

The Brain Injury Recovery Network, a 501(c)(3) non-profit organization dedicated to helping victims and families of brain and other serious injuries, has developed a Web site dedicated to providing practical advice from people who have suffered through the same experience. Their goal to provide information and support for both the crisis and the long-term care phases of recovery as well as prevention programs.

The Brain Injury Information Network

TBINET hosts e-mail lists for Brain Injury and other medically related topics. Features include: Searchable archive of past messages; security and privacy settings, customized for each list; virus and Spam protection. Lists include those related to: ABI/TBI Children Support; Caregivers; Spouses; Coma; Learning Disabilities

Surviving Brain Injury

Stories by David R., who wants folks to visit his personal Web Site.

Family Caregiver Alliance Resource Center

Resources and links: California's Caregiver Resource Centers; Quick Facts About Common Brain Impairments; publications and Fact Sheets; Public Policy and Long-Term Care; Links to Other Resources; Research Articles; Request for Participants in non-FCA Research Studies.

TBI Home

Offers message boards on a variety of topics including support, caregivers, survivors, current events, humor.  Also provides TBI/ABI-information and related links.

Social Security Disability Resource Center

An informational website that provides answers to questions about how to apply for social security disability, appeal a claim in the event of a denial, and how to avoid common mistakes made by applicants.

34 comments (Add your own)

1. John umar wrote:
I need to politely, caring, sharing, all base of true respect for all others, and I happen to be totally Open Honest, based on Truths Only.

NOTE:The Capitalized four words at out of my first sentence and out of the last six words that ended which were once again keyboarded the same way Open Honest Truths Only I had created one simple code more than 4 years ago which is OHTO. That abbreviated Code is Mine Alone to be used and I do not approve anyone other person to use OHTO unless they care to contact me.

OHTO shall be my Nickname to be used once I am approved to be joining into the Chatroom. And I shall be quite pleased into introducing myself by any for of my true first and last name. And for me to become interested into Openly Sharing is that I happen to be quite Caring and am very interesting of becoming involved personally to Help other both TBI Survivors as well as those who are employed to work very well to preform services just described in this sentence quite clearly to any or everybody all at once if so.

Fri, October 17, 2014 @ 6:58 PM

2. Garry Andres wrote:
I used to go into tbichat. Now I can't find it anymore. Is it gone?

Sun, February 21, 2016 @ 12:48 PM

3. John wrote:
I am a very highly classified young man of the age of 46 years young. In search for an equal life partner. If you know of any young ladies in my age range. please feel free to Email me at my address which is jrocks30@aol.com.
As I have been driving for 24 out of my almost 26 year injury as well as living on my own for the past 16 years now.
And I reside in the township of Jackson, in the state of New Jerzeyyy!!!
As you can see that I also have a great sense of humor to boot!!
John J. Meehan

Tue, August 23, 2016 @ 11:40 AM

4. John wrote:
I have been unseccessfully been trying to find the TBI chat room online for the past week or so. SO if you have an updated address to this site, then please by all means email it to myself at my address which is jrocks30@aol.com.

Once again, your help is much appreciated.
John J. Meehan
A TBI survivor of a skiing accident that took place back on 12/27/90.
But am sure, that you are aware of the fact that having a head Injury is a lifetime ordeal.

Sun, August 28, 2016 @ 6:28 AM

5. Molly wrote:
I am hoping to join a chat room. I am a tbi survivor 2004.

Mon, September 5, 2016 @ 12:15 AM

6. Beth Brown wrote:
I am married to a TBI survivor. We have been married 6 month. Known each other 2 years. His injury was 39 Year's ago, due to car accident. He thinks the w world should and does revolve around him. He does not want to hear anyone opinion,unless it agrees with his. My question is this typical behavior of a TBI survivor

Sat, September 24, 2016 @ 5:29 PM

7. Sue Lancashire burnley wrote:
Had bleeding on the brain then 2 year later I had a subracnoid hemorrhage I was lucky I still have problems

Thu, October 6, 2016 @ 7:23 AM

8. Sue Lancashire burnley wrote:
Has anyone had anything similar 2kx44

Thu, October 6, 2016 @ 7:26 AM

9. Marie wrote:
Our 31 year old son sustained a TBI one month ago.H e was in ICU for 3 days and the rehab for 3 days. He was discharged 2 weeks ago. He seems ok,still has headaches and is irritable and somewhat impulsive. We have a week vacation coming up and I am feeling we need to cancel. I am worried if he is left alone. Any thoughts?

Tue, October 11, 2016 @ 6:29 PM

10. Ozzy wrote:
This is a struggle. As much as we might want to quit, we cant quit. Keep fighting. I had a traumatic brain injury at 8 years old when i fell from a second floor house. Im 45 now. Its been hell since i had my injury but i have never quit although many times i wanted to quit. Keep fighting. It will get better

Sat, December 10, 2016 @ 4:07 PM

11. Ozzy wrote:
This is a struggle. As much as we might want to quit, we cant quit. Keep fighting. I had a traumatic brain injury at 8 years old when i fell from a second floor house. Im 45 now. Its been hell since i had my injury but i have never quit although many times i wanted to quit. Keep fighting. It will get better

Sat, December 10, 2016 @ 4:09 PM

12. Tom wrote:
Been married for 31 years now had a tbi 14 years ago now wife says she doesn't love me anymore because I'm not the same man she married.I don't want 2 go on without her , she is my every thing,how can she do this.most days she is the only one I see

Fri, December 16, 2016 @ 6:53 PM

13. Chrystal wrote:
Hi I am a 32 yr old married mother of 2.. I do not have an "official TBI but I have had 4 concussions in 2 years and have been suffering" pretty strong symptoms. I have found some refuge with relating to very mild TBI injuries. And I am struggling with coping with looking fine on the outside and feeling like a different person on the inside. Thank you.

Sun, January 15, 2017 @ 10:13 AM

14. Carolina Boy wrote:
Wanting to be alone after a brain injury is normal. People have to find & get to know the new version of themselves.The sad part is that seizures do come post brain injury.Most feel alone while regaining life post a brain injury. I was in a coma for 3mthns post injury time. The top 2/3's of my brain was removed. I do miss driving but I can live alone & take care of myself.I just need rides.But life does go on.My hardest part is knowing when a seizure will happen.I have been told I go into a blank stare when my seizures begin. But I do miss the TBI chatroom I first found online post injury.People can send me emails. I miss chatting a lot with others who have gone through a brain injury.

Wed, February 1, 2017 @ 9:29 PM

15. denise wrote:
I had brain surgery 17 years ago. During the surgery, I had a bleed in my carotid artery in my neck. They made an incision and clamped the bleed. I have had a great recovery from the brain surgery, but now I am having discomfort in my neck I assume is from scar tissue. It's almost like I have muscle spasms and it kind of freezes me until it passes. But lately, I'm having a straining feeling in that area without the spasms. Is there anything without surgery that I can do to relieve myself of the discomfort?

Fri, June 23, 2017 @ 9:28 PM

16. Wayne Gibson wrote:
Edited version:
wgibson70@yahoo.com

TBI
Just started using my testimony to TBI group.

I was in an automobile accident, on October 15, it will have been 28 years ago. I was in a coma for nearly 2 months and in the hospital so hospital for 3.5 months exactly. (10/15/89 to 1/1/90)
I had 2 brain surgeries, my body's right side was paralyzed for months, I had a Tracheostomy, and a liver laceration, and only being given a 5% chance of living by me operating Dr's, to name the big injuries.
I had to go through the mill to recover, but, I did it, with God's hand in it all.
My 2 brain surgeries have been the most major injuries of it all. I married the woman of my dreams 4 years ago, who I love more than my own life. However, because of my brain surgeries, I still suffer from anger outbursts, and I do not like them! Why? Because my wife, who is a Christian and a teacher at a local school, kicked me out of our house 3 days ago, and told me that she wants to divorce me, because of my outbursts and actions. I went to a NeuroPsychiatrist 2 years ago and was tested. I wrongfully didn't go back following this visit, but, from what my outbursts have now caused, I am going back to him to complete my needed journey on September 18. I am literally going back to the Doctor, for how ever long that it takes, to end my 28 years of attitude gloom.
If there is a TBI, stick to your NeuroPhsycholgic help following recovery, it will be necessary, my tragic encounter proves this, and do not give up. God will make a way, that is why He helps TBI sufferers to make it back to life. My awesome marriage is ending, but, my testimony of His power will carry on.
I am praying for you and yours. Please, email me any needed prayer requests or questions. :)

Tue, September 5, 2017 @ 1:37 PM

17. Cheryl wrote:
Has anybody had anyone who suffered cardiac arrest and they have sustained brain damage and have not came around properly after all sedation drugs been removed and they are still taking 3 seizure drugs please let us know if they have made a full recovery thanks cheryl

Sat, November 4, 2017 @ 2:21 PM

18. Cathy wrote:
Hi! I’m new to this group. I was hit by a truck several years ago and suffered a TBI . I call it the “invisible sickness”. I look the same in the outside, but- on the inside, so much has changed. I owned my own business. However, being in a coma, and the months of rehab... I lost that. I’m sure all of you have similar stories. Please tell me how you make it through every day now. Maybe we can help each other. I sure hope so. I know God saved me for my children. But they are grown up now and venturing out into their own lives. The way it should be, of course. I don’t have a lot of luck making friends now. Any ideas? Hope all of you had a good day today😀 Tell me something wonderful that happened to you today!

Sun, November 12, 2017 @ 7:49 PM

19. Anya wrote:
I am hoping someone sees this and can point me in the right direction. I'm looking for support groups.
My husband had a TON in 1998, we met in 2004, married in 06, have 2 beautiful kids.
He had another accident in 2013 where he hit his head and possibly concussed, but refused treatment. He never kept up with any Drs. Over the past 4 years, he began to be more violent, controlling, a total opposite of the husband and father who existed. I tried over the past 4 yrs to express my concern for his stability when our friend and I started noticing changes, along with the anger, the short term memory loss became more erratic, he often resisted attempts to help, lighten his load, seek help.
Last month, he snapped, he abandoned us, being quite emotionally and financially abusive, erratic to the point I had to put a PFA order against him.
I believe his multiple brain injuries have some responsibility. It's like the man we knew and loved is gone.

Sun, November 19, 2017 @ 2:17 PM

20. Anya wrote:
Ton=TBI

Sun, November 19, 2017 @ 2:18 PM

21. Mary Castellon wrote:
My husband sustained a TBI a year ago. It has been the worst time of my life. I have a Fantastic 21 yr old son, my daughter is 16 and my 26yr old niece who has been living with us for a couple of years. Trying to keep things together is unabearable. After the second month his family didn’t help especially when I begged because things were horrifically low!! Now one came but my kids and I am still here. The anger is setting in. The crying is bad. It’s not fair! Not to my husband, my children or to myself!!!

Fri, December 8, 2017 @ 9:01 PM

22. David Christenson wrote:
There is more than an objective reason I am a huge supporter for those who suffer from severe concussion/TBI and what they go through every day of their lives. Not to mention what their families go through. It is a helpless feeling and can just devastate a family. I know first-hand as I have had more than a few concussions and at least three TIA's and lost my family as they simply did not get that my darkness and moments of despair were not optional. Even though I was a very good father, they chose to not only throw me away, but attacked me during my fight to even want to continue with my life. It is not their fault, but rather just ignorance on an issue that young adults just cannot or chose not to understand.
There is good news though, I was blessed to discover a very powerful light therapy device and began to self-treat my brain. It did not happen overnight, but within a few months I started seeing significant improvement in my life and after just short of a year, I became a productive member of society again and founded Advanced Neurocare Systems. I continued to treat the entire time and still do and I must say, I am not 100% back, but very close to feeling completely normal. As you may know, all neurological disorders including concussions, TBI and neurological disorders all have one thing in common, lack of blow flow which is the essence of life and certainly is what it takes for the brain to repair itself. The FDA has cleared my devices for Blood flow, pain relief and wound healing. So, after repairing my own brain, I dedicated to dedicate my life to making this technology available to the millions who do not even know that it exists. The following is an article you may have seen on Tim Krumrie who is smiling again and is just one of hundreds that have successfully treated their brain. I have a decent amount of before and after brain scan and a significant study to support that this remarkable technology is the answer for neurological disorders. The sooner one begins to treat, the better the results.
An article worth reading

https://www.cincinnati.com/story/sports/nfl/bengals/2017/12/07/tim-krumrie-brain-trauma-wont-settle-sad-fate/905801001/

Sat, December 16, 2017 @ 1:52 PM

23. Mary Decarlo wrote:
Mary,
I totally get it. You are not alone. My husband sustained a TBI a few years ago. He is a different person now. I am do sad and angry all the time. You are not prepared for this. The family Dynamics are changed without your approval. Email me anytime.
Mary from philly

Sun, January 7, 2018 @ 9:56 PM

24. Julia wrote:
I’m a survivor of tbi I’m just looking for a friend who understands my challenges to talk to

Wed, January 31, 2018 @ 5:43 PM

25. Steve wrote:
I would love I'm basically well, I'm trying to survive TBI & PTSD it's a tough go I don't know where to turn have no support so it seems.
I'm lost alone
In this broken unknown
Tears one minute, reliving the past
The next thing I know I change my mask
Like a stick of dynamite
I blow without warning,how hard I fight
To keep a cool head
I want to just give up instead
Or do that or this to cop with the pain
Istead of help they cause me to go insane
Your to blame
Not carrying enough to find away
Help me Lord witch way witch way
Do I go to be a man again without shame.

Thu, June 14, 2018 @ 6:03 PM

26. Jordyn wrote:
My name is Jordyn and I suffered a TBI 3 years ago. I have become very lonely and haven’t had people to talk to who understand. Recovery is a dark lonely place and I’m missing who I used to be.

Sun, June 24, 2018 @ 1:08 AM

27. Kristi Skalman wrote:
Hi everyone,

My 17 year old stepson suffered a traumatic brain injury from a firearm accident on 6.6.2018. He was in the ICU until 6 days ago, and although he is stable he is in a coma. He has been opening his eyes and breathing without a machine. My husband and I are taking care of him, learning how to brush his teeth, suction his trach, and clean and reposition him. He is mostly only capable of basic reflexes at this point.

This has been the hardest experience of my life. On top of it, his biological mother isn't helping with his care and is using the occasion to harass us. She doesn't visit in schedule (at all) but then randomly makes demands for my husband and i to leave the hospital. We have been living there with My stepson this entire time, at the hospital. The stress of it is getting to me and I'm looking to chat with people who have had similar experiences to help me get through this. Most days I feel I can face the day but today and sometimes waking up is the hardest part of my day. Please if you have experience with this, reach out to me.

Sun, June 24, 2018 @ 4:28 PM

28. Beverly wrote:
I sustained a TBI in a T-Bone car accident eight years ago. No insurance and I am lonely, misunderstood, my friends left, children grown, I get talked about like I'm crazy. I offer what my problem is and most people don't know what TBI is and since I look fine they can't understand and don't take the time. I'm lonely, but I am upset that people just don't care which pushes me further in isolation. I'm easily taken advantage of which makes me scared. I hate being misunderstood. It's a strange place to be in. Love, peace and happiness to all.

Mon, July 2, 2018 @ 10:12 PM

29. Beverly wrote:
This is Beverly,my brain takes time to process and now I'll say more. My neck was broken C1,2,busted bladder, aneurysm on my abdominal aortic,pelvic ring busted two places, part of my hip on left side cracked, ten ribs broken two places left side, bleeding spleen, one rib broken right side, back shoulder broken left side, DOA and out for 5 hours. My husband divorced me after 24 years and I homeschooled three son 17 years, deacons wife, Gideons, children's,hospital ministries, cooked for I'll, homebound. My church friends just walked away. My children I want hem to grow and love they helped me the last seven years. I'm in trial mode and I cry because I don't understand. I've finally went to DHS and talk to a counselor and psychiatrist who gave me anxiety and pain pills. It's helped. Some people are nice but no close friends. Rejection is so hard. I'm searching for TBI support group I can physically attend. I have cognitive problems and anger flare ups, sleep, vomit, trouble swallowing. I can't take in a lot of information at one time, anxiety. I pray and the Lord s my best friend. This is my story. I'm 54. I try to eat no sugar, GMO, dyes, no meat. I do Yoga, lift weights, garden, and I love fishing , talk ng pictures, sunrise and sunset. It just gets lonely. I'm not a dater because its for one thing and don't agree and feel unsafe. So, may the Lord bring you happiness in the simple things in life. Push past your fears.

Tue, July 3, 2018 @ 9:36 AM

30. Beverly wrote:
It's me, Beverly one more time. I was an USAF wife for 24 years, I took Medical Coding after my wreck. It was in February and I took classes in June. I hurt so badly I stood. It took 16 months. I made Dean's list ever time but there is no WAY I can work in a room full of people. It's been my fifth year to crotchet beanie's for the Children's Hospital. I still love to cook. The Hospital I was in did a year long study on me because I refused surgeries I thought unnecessary and allowed myself to heal it's own way. My rehabilitation was a shovel and wheel barrow, and yoga. There s a lot f strength in yourself with God's help and time to xpress yourself in new ways. May you take each day to do something you might have never tried otherwise. I think I'm finished. I've enjoyed your truths and they have helped me. I hope I have done likewise.

Tue, July 3, 2018 @ 1:30 PM

31. Leslie wrote:
I was in a car accident on December 2nd 2017 will sitting at a stoplight I was rear-ended by a man going about 50 miles an hour. Although it didn't feel like it at the time besides some pain in my sacrum neck and head I didn't realize the capacity of my injuries as I tried to go back to work. I did go back to work for about a month-and-a-half and I started realizing everything was snowballing and was taken off work January of this year. I've been doing intense therapy ever since and by the grace of God I had a job working for one of the nation's lead specialist neurologist in concussions in traumatic brain injuries. At first I didn't have a lot of anger but I'm starting to feel very angry towards this person who has taken my normalcy stability Athletics and job from my life. In talking with one of the patients at the office I was told about support groups and I'm really interested in finding one if anyone has any information that would be great I live in White Lake Michigan which is near Commerce Michigan

Fri, July 13, 2018 @ 11:35 AM

32. CSilver wrote:
I am VERY disappointed that the CHAT room is NOT working! I am in desperate need of friends and support of others who are living with a TBI. This is ridiculous

Wed, July 25, 2018 @ 12:04 PM

33. SThomas wrote:
I too would like to chat with someone suffering from aTBI. It’s been almost 6 months now. Still crying every day very anxious. I dont know when this will ever stop. Also think I have A spinal cord injury. I’m so frightened. I cry every day and wish I had someone to talk to about it. If you would like to chat. I need that.

Sat, August 4, 2018 @ 9:35 AM

34. Tami Hochstetler Swick Roberts wrote:
I receiveded head injury from domestic violence 11 years ago ago. A back injury 12 years ago from boating. I lost my job not knowing I had a brain injury. My Dr boss fired me.My own Neurolologist says nothing shows on mri, however psychology tests show processing problems. I never had seizures before this though. I was in a business management position. A mother,very social and active and now I am forgetful I cannot do math, my teeth are rotting out of my head, I am unhealthy and cannot concentrate on anything. I loved to cook before and now I can’t follow a recipe right or remember to turn off the stove. I have been trying to get disability for ten years. I have lost almost all family and friends and have had zero and I mean zero financial help from state , family friends or otherwise. My only salvation has been the piitance of State insurance and 182$ of monthly food stamps which believe me I Thank God for every day!! One person I knew took me in what was supposed to be temporary seven years ago and has been stuck with me which he is thankful for the daily company because he has his own problems, however he makes me crazy with his messes because I was an anal retentive neat freak before this and now I feel his messes compound my stress. I tried to clean up after him so many times and then gave up and now have double the mess and feel like we live in a hoard. Now I feel like I just live as a pack with the dogs. Ineed help in the gravest of ways. Financial, support and otherwise please advise in my email anyway you can. My Dad also just died and my other salvation I had all these years was my Beagle Marley. I swear I got her a week before I lost my job and I don’t know what I would have done without her all these years. 😭😭😭. She got diagnosed with mass cell cancer two and half years ago and told me she needed her paw amputated and needed radiation then possible chemo. A bill of 13k. I have no income! No friends or family that much less my dog! I can’t imagine my life without her I really can’t! I started selling all my books and clothes to buy her this stuff called liquid gold and these wafers that are supposed to help the cancer and the tumor started shrinking. David, my roommate started buying grain free dog food and she got perky and two years later she seems very happy. I found a miniscule new tumor on her back a couple days ago and am beside myself! I don’t want to lose my dog! She could live to to 15! I feel like if two two years ago when she first got diagnosed if I didn’t have my brain injury and was thinking clearly or had any kind of support someone could have advised me then to start a go fund me page or something?? She is still perky and happy and runs and acts like nothing is wrong with her! Would you start a go fund me page?? IlAm I being selfish??who would donate? I have no one to talk to who understands me. My grandchildren love me but they don’t have long attention spans. My counselor talks for 30 minutes once a month and he said I can only see him for seven sessions. I have only seen two. It’s get better and get out. Please help me Im begging you😭😭😭 I have been locked up in this house pretty much the whole seven years because of seizures. Before that I didn’t leave the house because I had been kidnapped by a taxi driver and sheriff joe Arpio didn’t do anything about it so I was terrified to leave my house. That maniac is still out there trolling women for sure. Help😬

Fri, August 10, 2018 @ 2:06 PM

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